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Hallo, willkommen

This blog is a personal record of the life of a chronically ill (chronically awesome), disabled, dyslexic, doctoral student and entrepreneur.

I share the beautiful moments, and the hard ones. It's unfiltered, and extremely uncensored.

Enjoy!

Please Stop Breaking My Bones

Please Stop Breaking My Bones

Ah, so I've written a lot lately about accessibility, business, and personal stuff, so I guess it's time to talk a little about my health again. 

This past weekend, which was the beginning of Passover if you're me, or was Easter if you're a large percentage of Americans, was a really hard one. Surprisingly, considering it was a holiday weekend, I had a really high demand for sessions from clients, so I had long days - 9 hours on Friday, 12 on Saturday, 10 on Sunday, 14 on Monday. These aren't abnormally long days for me - in fact, Friday was on the short side (acceptable considering Passover began at sundown). But despite it not being anything abnormal or excessive compared to a standard week, though the weather was a bit funky, which is often a trigger, I had a fibro/EDS flare up. A bad one.

Usually, when I flare, I have really bad pain (or, more severe than normal, might be a better way to phrase that, as my pain is always "bad"), my cognitive function plummets, I'm fatigued, and generally miserable. It usually lasts anywhere from a couple of days to a few weeks (though last time it was about 2 months! Oh dear deity, I nearly died). It's hard, but it is what it is. During those times I practice better self-care, try and rest when I can, become a complete recluse, and drink a little extra bourbon. I remind myself that "this too shall pass" and most likely isn't the new normal; though there have been times that my flares have become my new normal, and that is pretty shitty, to be honest. But once again, it is what it is. My stoic practices really help me get through these times, for which I am grateful.

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But this time was different.
Saturday was rough, but just "rougher than normal," not usually what I would have considered a red flag for an upcoming flare. Just a difficult day. But Sunday... Sunday I felt like garbage. Beyond garbage. But I went to work, saw all my clients, did all my follow-ups, sent out all my referrals, and by the time I was preparing to leave the office I was so exhausted that I physically had a hard time standing up from my chair. The pain was so unbearable that I seriously questioned whether or not I should drive anywhere. But, being headstrong and independent (perhaps to a fault), I did. I got myself home, collapsed in bed, wrapped myself in heating pads and electric blankets, and spent the rest of the evening sobbing in pain, fading in and out of consciousness, struggling to breathe.

I've been in severe pain every moment of every day for over 11 years now. I'm pretty used to it. While it sucks big time, it's not worrisome. Like, when I have intense chest pain that mimics a heart attack, I don't go to the doctor. I tweet about how annoying costochondritis is. When my skin and blood burns, I don't rush to the ER, I just make sure to wear soft, loose-fitting clothing, and off to work I go! When I dislocate my hip or scapula or another joint YET AGAIN, I don't rush to the urgent care center, I just manually pop it back into place, swear a little, and move on. Pain and funky (sometimes terrifying) medical stuff is my every day. But Sunday night, as I laid in bed, it felt as though every single bone in my body was being broken. Slowly. Crushed. Splintered. Smashed. Then patched back together and broken again. It was hands down the most severe pain I've ever experienced (and remember, according to fancy specialists, my normal "bad day pain" is about that of childbirth). As I mentioned above, the pain was so severe that I was sobbing, tears rolling down my face and soaking my pillow until I had no more tears to cry (I rarely cry from pain. This was a very odd occurrence). I was blacking out from the intensity of it. I was nearly unable to feed myself, drink water. Mobility was next to impossible. It was... a new level of awful.

It got bad enough that I thought - and actually said out loud - "maybe I should go to the emergency room..." But my insurance (through a major healthcare provider) is garbage, and wouldn't cover it. I knew that my pain was just that, and that the only reason I would be going was for pain relief. While that's SUPER VALID, I could not bring myself to pay hundreds-to-thousands of dollars out of my own pocket for something that isn't life-threatening. So I laid there, wrapped in blankets, cat sitting worriedly by my side, and held on til morning. I got an hour or two of sleep - which was less sleep and more passing out from pain and exhaustion - but mostly I just prayed to die already. 

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The good news is that the flare-up was only that severe for one day, and was back to normal tolerances within a few days. But the point of this isn't to make you feel sad for me (don't you dare! I'm awesome!), or even to draw attention to the shitty mess that is our healthcare and insurance system (though yes... that). But the primary point of this, and all my posts about my specific collection of weird, rare, degenerative, hereditary, incurable nonsense is this: Disability can look like anything. We must be more aware and less judgmental of what others are going through! We must expand our care and options for disabled folks, regardless of what that looks like. 

I'm 30. I'm pretty-ish and thin. I work long hours and own businesses, plural. I am completing my nat med PhD. I ride a motorcycle. I can walk without my cane (though it's painful and I fall a lot). I'm not what most people envision when they think of a disabled person (not a "differently abled" person. I'll break your kneecaps. Dis-Abled. Say the word! But I digress). But I'm moving towards wheelchair use, even though you can't see it. I wear braces and tape my joints into place, even though you can't (always) see them. My neurons are deformed, registering normal sensations as pain, even though you can't see it. My blood vessels, heart, ligaments stretch and break, even though you can't see it. 

And yes, I recently participated in the #DisabledJoy hashtag on Twitter. I am a very happy, light, ethereal person! But disability is still harder than any abled person could imagine. And yes, I love my disability, because it's part of me, and I've learned so much from it, found myself and my voice, learned patience and strength! But it also really fucking sucks. 

I'm getting ramble-y so I'll close with "you can't judge a disabled book by its cover." Don't question peoples disability because it doesn't look like what you expect. Respect disabled people. Stop suggesting remedies to us. Don't block our parking or access areas (yes, even if you're just running in real quick, or if it's raining, or literally any other reason). Hold the door for us, but never touch our mobility aids, and respect if a disabled person says they don't need assistance. Encourage local businesses to make their spaces accessible. Support disabled business owners, crafters, artists, musicians. Vote for people who will protect and even EXPAND the ADA! And most importantly, be kind. Treat us like people. Because, shockingly, we are. :)


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